Date: Fri 23-Apr-1999

Publication: Bee

Author: KAAREN

Quick Words:

make-a-wish-Jessica-McPartland

Full Text:

GENNEWS / LIBRARY

with cuts: Another Wish Comes True In Newtown

B Y K AAREN V ALENTA

Her bright eyes flashing, Jessica McPartland rocked gently in an infant's

swing in the front yard of her home in Sandy Hook.

Jessica's parents, Jim and Michelle McPartland, took turns pushing the swing

while Make-A-Wish Foundation volunteers Mary Gunzy and Tara Keefe watched,

smiling.

"This is the best part," Ms Gunzy said. "She looks like she is really enjoying

it."

The nonprofit organization that grants wishes to children like Jessica with

life-threatening medical conditions had installed a brightly colored play

station complete with play houses, two slides, and a sandbox, in the yard of

the McPartland's new home on Lakeview Terrace.

When the McPartlands moved to Sandy Hook from Swamp Road in Newtown six months

ago, they left behind the swing set that Jim had built for his daughter. It

was the first thing that came to mind when they were approached by the

Make-A-Wish Foundation to grant a wish for Jessica.

Now 4, Jessica was a bright, chatty toddler when she began to have seizures on

New Years Eve in 1996, days after recovering from a 105 degree fever. Since

then, she has undergone extensive testing, repeated hospitalizations, many

drug trials and two brain operations. A third surgery is scheduled for early

May.

"Jessie was talking and was almost potty trained before the seizures began,"

Mrs McPartland said. "Now the doctors say she has the mentality of a

nine-month-old."

The first seizures were mild, but they grew in intensity and frequency over

the months that followed. The McPartlands took Jessica to specialists at Johns

Hopkins in Baltimore, Md., Westchester Medical Center, Columbia-Presbyterian

Hospital in New York City, and Yale-New Haven Hospital.

"We tried everything to stop the seizures, even the high-fat ketogenic diet at

Yale," Mrs McPartland said. The first surgery was performed in 1997, at

Yale-New Haven Hospital to remove a shriveled, scarred hippocampus, a section

of the brain behind Jessica's left temporal lobe.

"That part of the brain deals with memory," Mrs McPartland said. "After the

surgery, Jessica wouldn't cuddle, she didn't want to let you hold her. But the

seizures, which had been happening 10 to 12 times a day, decreased to three or

four a day, and they would only last 30 to 40 seconds, instead of three

minutes."

After the second surgery, at Columbia-Presbyterian Hospital in New York City,

Jessica seemed more alert, more willing to cuddle. But like an infant learning

to walk, she was constantly falling and getting hurt.

"We don't know how much she understands," Mrs McPartland said. "But she

doesn't seem to know about walls - she's like a bumper car walking into walls

and furniture. Once she fell into the piano, hit her head and had to have

stitches."

From a catalogue that carries devices for handicapped persons, the McPartlands

bought a large helmet with a clear plastic facial shield for Jessica to wear

when she is walking. The catalogue came from the Probe program at Sandy Hook

School, where Jessica also began to learn to use sign language to communicate,

Mrs McPartland said.

"Probe is great," she said. "But it is only four hours a day. When all of this

started with Jessica, I had to quit my job - no day care facility would want

the responsibility of caring for her - and I wanted to be with her."

In the middle of the living room of the McPartland home on Lakeview Terrace is

a large igloo-shaped tent filled with pillows and comforters that Jessica

loves to play and nap in.

"I couldn't believe it when my husband started to put it up in the living

room. But Jessie loves it. It's a safe haven," Mrs McPartland said. "She was

always falling out of things like play pens."

Jim McPartland said doctors describe Jessica's condition as focal cortical

dysplasia.

"Children are born with this and it usually erupts between the ages of one and

14," he said. "Or it could lie dormant and never erupt. The doctors speculate

that the high fever may have triggered it in Jessie. The condition involves

abnormal brain cells that clump together in the back of her head."

Doctors have prescribed many drugs, in varying dosages, in an unsuccessful

attempt to stop the seizures.

"A month ago she began seizing nonstop so we rushed her to Danbury Hospital,"

Mrs McPartland aid. "She had 130 seizures in 24 hours. Columbia sent a team to

Danbury to bring her to New York and she spent six nights in ICU [the

intensive care unit]."

At that point, the doctors as Columbia-Presbyterian decided a third surgery,

more invasive than the others, was necessary.

"The surgeons feel there is still some tissue in the back left side of her

head that must be removed," Mrs McPartland said. "They plan to open her skull,

cover one-third of the brain with electrodes and leave them there for 24 to 48

hours - as long as Jessica can tolerate it - to monitor her brain activity.

Then they will take out the electrodes and take out the tissue that is still

causing the seizures."

"The doctors are afraid that if the surgery isn't performed now, they will

lose the window of development," Mrs McPartland said. "They said there's a

50-50 chance that the surgery will help her - and that's actually pretty good

odds."

Originally from New York City - Michelle from the Bronx, Jim from Queens - the

McPartlands married and moved to Newtown five years ago. Jim works for Con

Edison in Westchester County, Michelle was a claims adjuster for State Farm

insurance in Orange.

Jessica was born 10 months after the couple moved into the house on Swamp

Road.

"After I had to quit my job, the mortgage payments were too big, so we moved

(to Lakeview Terrace) six months ago," Mrs McPartland said. "The most

stressful part was moving 10 days after Jessica's second surgery. We had to

pack up the contents of a three-bedroom colonial home. But fortunately Jim has

good medical insurance and we're able to pay our bills. We aren't looking for

any fund-raising or financial assistance."

"Providing for Jessica and her future is the most important thing in the world

to us," Mrs McPartland said. "When she first began having seizures, I thought

I might be pregnant, so we asked a neurologist if another child would be born

with this condition. He said we had a better chance of winning the lottery.

Jim said we already did."

Mrs McPartland said the mother of Probe student Whitney Balakier, also of

Sandy Hook, had given the Make-A-Wish Foundation the name of Jessica and Emily

Barbour. Make-A-Wish gave Emily a motorized golf cart last fall, so her family

could take her on rides around their property on Schoolhouse Hill Road. Both

families said they wanted to help call the community's attention to the work

done by the nonprofit charity.

"The McPartlands were adamant that they would do any publicity to help

Make-a-Wish," Mary Gunzy said. "Tara and I are wish-granting volunteers. It's

a wonderful job."

Donations to the Make-A-Wish Foundation of Ct, Inc., may be sent to 940 White

Plains Road, Trumbull, CT 06611. The foundation also can be reached by calling

203/261-9044.